Diagnosed today...Is This Normal???

[karen10300]

Hi. I was just diagnosed today but like everyone else I have been suffering with IC for quite some time. My biggest concern is that my Dr. didn't prescibe any meds except for the Urelle that I have been on for some time now, to watch my diet and buy some Prelief. He (the doctor) said that we will sit and talk about IC and what plan of action we will take on my next visit. The whole thing about this is that my next appointment isn't for another month. They say this is the earliest appointment they have. Can someone please tell me if this is normal? What do you do about the pain inbetween now and then? I guess I'm just really upset because of having this pain for so long now and I thought once I was diagnosed that some kind of treatment plan would be started right away.

[emilyrose197377]

I am sorry for what you are going through I guess it depends on the dr. I have never been on urelle what is that? I am waiting to get started on elmiron I take elavil at night that is for pain ,vicodin if it gets really bad and urised. what can you do in the meantime I don't have urgency and frequency with my ic so I can't help with that. but for pain you can try over the counter pyruiduim it is called uristat if you burning and stinging lidocaine creme with aloe over the counter helps some heating pads over your stomach can help some. I hope you find some relief soon.

Take care
Kim

[karen10300]

Urelle is very much like pyruiduim. It's by prescription and the nurse at my doctor's office says that my doctor feels it works better than pyruiduim.

[Dixiefireball]

:hi: Karen and :welcome: to the ICN family i'm sorry you was dx with IC but your doctor should at least had a plan set up for you today to start you with some type of help. most doctor start us off on the diet which you can find it at www.ic-network.com/handbook the medicine they first normally try to use is elimron which helps coat the bladder lining. which is a must. we have to have something coating the bladder lining.
he may on the next visit talk about installments there is many diff. ones of them what helps me most is heparin and marcaine.
you can read all about the treatments av. at the website i gave you above.
heating pad, or an ice pack may help you if your in pain. You may want to call your doctor back if you dont have any type of pain meds and there not helping or you need some. Please don't stay in pain if your in it.
if you need anything we are here for you ask any question you need to. we ain't doctor but we can tell you what we went threw. and try our best to help you.
keep your head up high you will get better! it just takes time to find what treatment works best for us.
sending you hugs and prayers
Rhonda

[MelissaJ]

I totally understand how frustrated you are. I just moved back to my hometown to take a job here for a year. I got my old gp back no problem (the receptionist there has known me since I was born) I went and got a referral to a urologist. This was in March. I went back to my gp for something else about a month later and she asked if I heard from teh urolgists office and I said no.
I finally had to call them and apparently they had booked an appointment for me - in September!!!! Not only that but unlike the usual thing where they call you the day before, I have to call them to tell them I am still going! The only reason I am still keeping this appointment is because I happen to know people in the health field here and he is the most recommended doctor (he actually goes to lots of seminars to keep up with what's happening,etc)
So, I guess we can both be frustrated together

[K9wife]

I agree with all of the above. I actually work in a doctor's office and am embarrassed when I have to tell a patient that I know is suffering that they have to wait months for specialist care. A little known fact is that Family Practitioners are now being observed, graded, and actually rewarded on the number of specialty referrals they make by the (?) AMA, insurance companies, and Medical associations,and even reprimanded for not doing enough referrals out, thereby LOADING the specialists offices with patients whose problems could just as easily be treated by their primary care Dr. I have been in office work for nearly 30 years and have watched medical care sadly sink, and it's always the patient in pain that loses from it, in my opinion. Then add to that the abuse of pain meds by people that don't truly need them, and again, it is the patient truly in pain that suffers because of the Drs fear of judgement by the DEA and other watchdogs. I only wish that 30 years ago I would have had access like this site to give me the encouragement and education re: IC to get me through nights like I'm having tonight....at least so far THAT hasn't become a waiting issue! Maybe we could all ask our elected officials to go an entire day without emptying their bladders and see how well they would like to live our lives? hmmm...a thought! Think positive, read the posts on sites such as this one from people who REALLY know about IC (even some Drs don't) and you'll see that Ic IS liveable. Not always fun, but endurable.

[mayray518]

He should not make you wait a month. It took me two years to get diagnosed so things are improving but these docs still dont realize how we suffer. He should have at least started you on elmiron. I would call and tell them that if someone cancels to get you in there ASAP.

[ICNDonna]

Actually, it does sound like you are on a treatment plan --- your doctor has ordered a medication for you and recommended the IC diet for a month to see how you do. If, at the end of the month you don't feel any better, I'm sure other things will be ordered for you. How were you diagnosed? If it was by hydrodistention, that alone may help with symptoms after a brief recovery period.

Sending healing thoughts,
Donna

[karen10300]

Thanks everyone for the emotional support shown here. I really appreciate it so much.I have been in so much pain the last four months and was really depressed when I was diagnosed yesterday because I have been reading about IC and I really hoping that my doctor would tell me it was something else with an easy fix. I imagine everyone here feels that way. Like Melissa, the doctor I'm seeing is the only one really recommended in this field in my area. My sister works in a doctors office & says that's who they refer their patients to. I told her if she didn't refer so many people there maybe I could get in sooner.lol

[VickiB]

Yep, I know that feeling! After a long time in pain I was so relieved to finally hear a doctor say "I know what you have!"! I'm thinking now we can get this stopped! What a sinking feeling to hear there's so cure!

This beginning stage of diagnosis you're at is so hard! Hang in there- things will get better.

Please do read about & try the IC diet. That was the one most helpful thing I did to stop the pain I'd been in.

Vicki

[sheryl*]

Karen I a new to the board too :) . I dotn have the amount of pain many people have assoicated with this, this is why my uro having a hard time really dx me, all the over active meds dont work for me, make matters worse, have heard of the elmiron, but not taken that one. Preleif definatly helps me some. i am reciveing dmso treatments adn if they dont work then I will be getting the bladder bipospy, I guess at that time they would do the distention??? Not really sure, that why I am here to learn more about all this. Good luck to you, hope diet helpos some, but do call and see if they can put you on a cancellation list if the pain does not subside for you....Sheryl

Melissa I will should proabably sleep in the bathroom too :toilet: